Cmt

I was diagnosed with CMT and my sister and brother have been diagnosed also. My sister has it the worst. She's had multiple surgeries to keep her walking. My brother and I have a milder form where we fall unexpectedly and usually in our case something gets broken like an ankle bone. My question is does this sound familiar to anyone? I also have bursitis and arthritis along with weakness and tiredness in my legs when walking up stairs. Please share if you have similar symptoms.

All this sounds familiar! I'm struggling more and more and have been at times in wheelchair 80% of the time; Used an electric power chair when I'd take a fall as I had recurrences from the stress and damages. had to give up driving for a while from back and leg issues and not feeling safe enough to rely on my reaction time. I was diagnosed at age (but struggled and not knowing what I battled) when my two younger children were 2 and 4 yrs old. My youngest daughter is confirmed to have and son is inconclusive after two tests. Daughter recently popped her knee out and hit the ground with her 2 yr daughter in arms. Now awaiting results on MRI to see if they will need tor repair meniscus. I was first and only in family to be diagnosed but suspect I have two types. One from mother's side of family and one form father's side. Think Dad's mother was severely affected, as reflecting back I know she had real bad symptoms at times (when stressed) Managing the disease in your own individual situation is what's best, and a group like this can assist in that greatly!

Caution in anything is recommended, but also activity level should be pursued as long as you don't overdo your level of ability. Don't allow yourself to do more damage by pushing beyond pain, and if you have pain 2 hrs after doing something you have done too much.

Add me to your friends list and PM if you want to talk more on phone I'm open to sharing more if you'd like!

CM